The Best of the Best

We have met a few doctors at the very top of their field.  Without exception they have been the nicest people. Today we met another wonderful human, chief of pediatric neurosurgery at NYU Dr. David H. Harter. 

https://nyulangone.org/doctors/1114912292/david-h-harter

Today has been a confluence of 3 great rivers (minds).  In eastern mysticism this confluence is very auspicious.  Dr. Akman, Dr. Fryer (headaches), and Dr. Harter specialist in hydrocephalus.  Dr. Harter took one look at Byron and said “I don’t care what all the imaging says, my spidey sense tells me there is something wrong with this shunt.  When a shunt is malfunctioning  it’s like you are driving full speed with the parking break on.”  

My jaw dropped.  I told him that this is exactly what I feel like has been happening to Byron!

So that concern brings him to his next action.  He wants to perform minor surgery tomorrow to go into the shunt and in his words “look under the hood” .  Byron agreed that he wanted this too, to be sure of all possibilities.  So we all agreed- EEG today to check on seizures, pain protocol for headaches, and a thorough physical check of the shunt.  Phew!  We might actually solve this 👏🏻👏🏻👏🏻

Byron is Lucky

 We hear that a lot from doctors and others.  And they said it again today.  Byron's primary epilepsy doctor, Dr. Akman happened to be on the floor today, and at the same time that she was visiting, NYU's top headache specialist also happened to be on the floor. So NYU's head of headaches :) and the chief  of epilepsy were able to interview Byron in depth and then confer together. to create a plan.  Byron IS lucky!

The plan is this - tonight they will hook Byron up to the EEG leads to make sure he is not having seizures.  At the same time, the headache specialist will come up with a plan to stop the pain from the headaches.  Dr. Fryer, the headache specialist, thinks that the shunt surgery might have caused Byron to have migraines.  And these migraines are what is causing all of Byron's problems right now.  The fatigue is seizure medicine related, but the headaches could be severe migraines.  

Maybe if we get the headaches under control, Byron's sweet and bubbly personality could return!

The Never Ending Saga :)

So here we are, back in NYU Langone - AGAIN!  Sheesh.  Poor Byron. Poor us :)

Nice view through:

Here is what is happening now.  Yesterday morning Byron took a test at school.  When he got home he was in excruciating pain (in his head).   I reached out to the Neurosurgeon via the patient portal to see if there was any way to see someone as an outpatient i.e. to not go to the emergency room.  Her response was "Please come to the emergency room now, we will let them know you are coming."    The drive to the emergency room was very hard for Byron.  He vomited as soon as we got to the hospital.

This is a kid who has been through two major brain surgeries with basically just Tylenol for meds after the first 48 hours. He has a high tolerance for pain. He was back in school a month after the last surgery, full time with college courses.  

But this shunt placement surgery has fundamentally changed how Byron acts, feels, looks, tolerates stress etc. He has a hard time reading anything and is constantly tired. And now we must get to the bottom of these headaches.  He's usually fine in the morning and then devolves through the day.

He has had several tests so far.  One showed that the shunt might not be draining enough so they adjusted that. Just as an experiment Byron took an online test that was due today and so far no headache so that is good news.  But the doctors really don't know what is happening.  They are conferring this morning and they will come speak to us soon.  I told them that what we need now is the "why" the headaches are happening, and a pain management protocol for when they do happen.  When we got here they had him on something called Toradol which really cut the headaches almost immediately.  But you can't use that at home apparently. 

More soon I'm sure 

Doctor's Appointment Updates

We travelled to Westchester today to see Dr. Akman in her new offices. Dr. Akman is Byron's epilepsy doctor who moved to NY Langone from Columbia.  

She thought he looked good and thankfully, is going to slowly wean Byron off of one of his three medicines.  So we having a weaning plan for the Depakote.  

Then we made an appointment for March 30 for inpatient testing at NYU.  This would mean that Byron would check in to the hospital, get weaned off most (if not all) of medications in order for the seizures to start again.  Then he would have a follow up SPECT test and another different kind of MRI.  Once these tests are complete, Dr. Akman will present him for surgery some time in June. 

This is all very good news.  The best news is that she does not think there is any need for the horribly invasive SEEG test (electrodes directly on the brain).  She thinks this is way too much stress for him and we agree!

I took this picture of her computer.  It shows how high resolution the MRIs are getting! The image on the right shows how little of the right brain remains. The little sliver in the back is likely what is causing all the new problems. 

We are all still a little concerned about the headaches.  Byron is still very uncomfortable most afternoons, in need of an ice pack on his head and a long nap. Dr. Akman wants us to keep her updated about these going forward.  They concern me a lot and they really limit what Byron can do during the day.  

Normal Day :)

It was nice to have a normal family Saturday.  Byron really wanted to see Paddington in Peru so we traveled to Middletown and had Indian food and then watched the movie.  (great movie BTW) 

Byron was ok in the car on the way down - chatty and happy.  We gave him his medication right after lunch and then watched the movie.  On the way home in the car he was suffering.  But when we got home he did not throw up which is progress.  He slept for about 90 minutes and then was ok again.  

I'm not clear why each time we drive home from any activity or appointment his body goes into disequilibrium. Maybe it's the motion of the car, maybe it's exhaustion - really no idea.  But today was better.  All in all it was a GOOD day all things considered.  

The Long Haul

This weekend I was supposed to go to Florida for a visit with a dear friend.  But I had to cancel it because what is going on right now is really a two person job.  Bob does all the medicines, of which there are 5 in the morning, 1 mid day and 3 at night (with multiple pills for each). Byron can't really swallow pills so there are all kinds of work arounds that Bob has figured out.  Some go in pudding, some gets split really small, then there is a strong cranberry drink Byron takes after the liquid med so that he doesn't gag on the taste. 

All these medications have side effects including loss of appetite, emotional issues (anger, aggression) and of course they all bring on fatigue. He gets fatigued extraordinarily easily.  Yesterday he had one hour of school and a voice lesson and that was too much.  

For me there is figuring out what kinds of foods Byron will eat.  He has little appetite, The last two nights I cooked dinner for him but he couldn't eat it. 

The pain in his head and abdomen seem better.  He now has two incisions in his abdomen and one in his head near the back where they put the shunt in. They all seem good and healing well. 

Our meeting with his doctor is on February 13.  Our new goal for this meeting is to see if Byron can be admitted during his spring break (rather than waiting until summer) for the SPECT test and the SEEG.  The SEEG is a very invasive test that will tell them exactly where the seizures are coming from. In this test the electrodes are placed directly on the brain.   The goal for both tests is to see if he could be a candidate for another (and hopefully final) surgery to remove whatever is still seizing.  And most hopefully, that the good side of his brain is NOT seizing.  When we left they told us that they were seeing the beginnings of that possibility, which is not good news.  The surgical outcome would also be that he can get off these awful medicines. 

And of course there is watching him like a hawk, hoping that there are no sudden trips to the emergency room. Checking on him, his symptoms, making sure he stays stable and rested.  He needs a nap every day but feels really weird afterwards.  He describes it as his brain being out of sync with his body.  So there's that.

Of course we are in this for the long haul, but the surgical option is still the light at the end of the tunnel.  We still are hopeful that he can go to college in the fall and so we work towards that.  But I do hold that goal lightly right now.  Bob holds it more firmly.  But we are on the same page with most things so that is good.  We need to be a strong unit right now, for Byron. 

Much Better Today

The thing about having a medically complex child is that it is just that... complex.  With the addition of Hydrocephalus to the list of things to watch and learn from, it makes figuring out exactly what is wrong difficult.  Is it the shunt malfunctioning?  Is he having a seizure?  

Yesterday Bryon was in excruciating pain most of the day.  He had a terrible headache and vomited.  Last night was quite awful.  I was tossing and turning having no idea what was going on.  Would we need to go back to the emergency room?  NO idea.

Today he woke up just fine -  chipper, happy.  He said yesterday was just a "stress headache" and he vomited because he got really car sick.

Hmmm...ok.  I truly hope that is all it was. 

Hoping for Better Days

Byron still seems unwell.  He has a severe headache and vomited on the way home from lunch. He is very aggressive and angry today.  I will keep a log of these changes to see if there are any triggers.  Apparently (learning from my new support group on Facebook) that shunts are very sensitive to barometric pressure.  Friends I know who get migraines say the same thing.  The sky is dark and we are about to get a snow storm.  Maybe that's it?  He's asleep now, in the middle of the day which he NEVER does, so I'm hoping he will feel better soon. 

New Support Group

Support groups have been one of the most invaluable resources on this medical journey thus far.  At first it was CHASA - The Children's Hemiplegia and Stroke Association, that guided us through the beginning of our journey. It was a simple Yahoo list serve then, but being able to ask questions of other parents and hear their stories was invaluable.  We went to two CHASA retreats that were simply incredible.  It is/was wonderful  to hang out with other parents and children who are going through exactly what you have experienced.  

Then when seizures reared their head, we found great resources with the Pediatric Epilepsy Surgery Alliance.  We almost went to their retreat last year in Boston but had a scheduling conflict. 

When I was diagnosed with Acoustic Neuroma- the Acoustic Neuroma Association was so helpful. I have attend webinars, Zoom support groups, and have spoken to those newly diagnosed through connections mades through this organization. 

Now - on to hydrocephalus! I joined their national group and lo and behold, there is a meetup in NYC in February.  So happy to be attending with Byron and Bob on Sunday February 23 at the Sugar Factory on 8th avenue. 

All of these groups interact through Facebook online communities that are easy to access, post, reply and search.  Say what you wish about Facebook but it is an invaluable resource if you are looking for communities such as these.  

Looking forward to this next meet-n-greet!

Byron is Home

 All is well. Byron’s stomach and the incisions hurt but otherwise he is doing great. Crazy 48 hours! 

Byron Released!

 Bob and Byron are on their way to our apartment in Washington Heights for a well earned rest. Byron reports he has no more pain!

Out of Surgery-All is Well

The surgery was a success. Byron is in recovery. I had a chance to speak to him. He’s uncomfortable because they intubated him. He says the thing that hurts the most is his throat but that is to be expected.

They were able to fix the shunt without going anywhere near his head.  They did everything they needed to do through the abdomen. They said if he’s feeling up to it he can go home tonight. Otherwise in the morning.  Picture below of Byron just now. 

Going into Surgery Now

So they found the problem. Phew!  The tube from the shunt was curled in Byron’s abdomen and this was causing the pain and improper drainage. They are going in now to fix it. They will use a new technique they developed to secure the tube to a tendon (I think) so it won’t move so much. Why they didn’t do this before I don’t know.  But it is possible that he could be home today!

Back in the Hospital

For a few days Byron has been experiencing severe pain in his lower abdomen.  Yesterday he started having headaches, like before the shunt placement i.e. sharp pains above his eyes.  We spoke to the surgeon's office and they encouraged us to head to the emergency room at NYU Langone.  So Bob and Byron went off last night.  They checked in about 10 pm and have been up all night since. The doctors in the emergency have done of lots of test with no definitive conclusions.  They are goin to admit Byron this morning and do a dye test with the shunt.  This will tell them how fast it is draining and if it needs to be adjusted. More soon...

First Day Back at School

Life returns to a new normal.  Byron had a good first day at school today.  The kids made him a big welcome poster and he was very pleased at how the teachers are accommodating him.  

Also our beloved Nana/Charlotte/Mom-in-law has returned to sunny Florida just in time to escape from the new snow here.  Her flight was delayed four hours so she got it at the unholy hour of 1 am but we are so happy she made it safely.

I won't be posting here every day now as things are going to hopefully get a bit low key.  But if there is something to record I will surely post it.  Thank you for accompanying us this far on this wild and crazy adventure.

Happy

Byron is happy to be home.  He's playing his video games, even going on line with friends to chat while playing.  He is smiling and seems comfortable. He's a bit more listless than normal but not so much that he is sleeping all the time. 

Taking the multiple medicines is challenging for him.  The Keppra is 10ml in liquid form which tastes awful.  He is taking the liquid form as the Keppra pills are too big for him to swallow.  He is having trouble swelling the other 6 small pills.  He can get them down but it takes a really long time.  But if that is our only hiccup we'll take it!

Byron goes back to school on Tuesday.  The school has been very helpful and cooperative.  The school is structuring it so that Byron only needs to take two courses this semester to finish high school and his Associates Degree.  This is partly due to the fact that he worked really hard last semester.  And according to his doctor he did this while having seizures and hydrocephalus! Because of the light schedule this semester, he only needs to be in attendance a couple of hours a day on Tuesday, Wednesday and Thursday.  He will graduate on time with a Certificate of Completion.  He will not receive a Regents Diploma as taking further Regents tests will be way too stressful for him.  Regents are three hour long standardized tests on different subjects. The colleges he is applying to all take the certifcate  diploma so it is no problem.

Byron is Home

He looks more tired than I have ever seen him.  He has very dark circles under his eyes and his is pretty grouchy.  Now the glue removal protocol begins.  His hair is thick with all the glue from the multiple EEGs he had.  It's a multiple step process of baby oil, dawn liquid, shampoo, conditioner, fine tooth comb out and then repeat.  It is amazing how tenacious the glue is.

We are hoping he can go back to school on Monday.  Hopefully the rest of the week is resting and getting acclimated to a three times a day medication schedule. :(

Byron's Coming Home!

After his SPECT test this morning we learned that this was likely the first of many tests that would be required before a decision could be made if surgery was an option.  

This would mean Byron would stay in the hospital with an unknown outcome.  The additional tests required are another SPECT test done off all medications (so he can start having seizures again), and an SEEG which is a very invasive test where they put electrodes directly on Byron's brain through the skull.  Both of these tests have risks, the biggest risk is that once off seizure meds, we may lose the good control we have now.  Seizures are finicky and if they get active again, they may be more difficult to control.  And this is a HIGHLY undesirable risk at this time, now that he is stable. 

Soooo... it seems the best option is to take Byron home on all these meds, and let him return to school and finish out his senior year.  It may be hard for him, he will get tired more easily, but the school has been great and I am sure we can work something out.  

We are all actually pretty relieved.  Byron can completely heal from the shunt surgery he just had, before we add any more stressors to his system.  And the seizures are controlled for now so this is a win.  

It could be as early as tomorrow that the NYU satellite team; Bob, his mom and Byron come home to the frozen tundra :)

Morning!

 This kid amazes me. He can still smile easily and doesn't complain (much) :)

New tests start at 10 am.  Hopefully more updates soon.

SPECT Test Tomorrow

Today was low key. The EEG leads were removed and seizure meds stopped. This is all in preparation for the SPECT test. Google tells us :

A single-photon emission computed tomography (SPECT) scan is a nuclear imaging test that helps identify the part of the brain that causes seizures. It's often used to diagnose and treat epilepsy. 

How it works

-A radioactive substance is injected into the patient's vein. 

-The substance travels to the brain, where it emits gamma rays. 

-Cameras record the gamma rays to create a 3D image of the brain. 

-The scan shows which areas of the brain are more active during a seizure. 

They will take Byron off all meds today so the seizures can start up again. I think it will be a tough night. But then tomorrow someone will sit with him all day and push a button whenever he has a seizure. This will create a 3D image of wherever the seizure is coming from. 

In other news, this fellow came by today. I understand he was quite charming.